What if my doctor got it wrong?

When I was first told I had fibromyalgia, I was so relieved to have a diagnosis. I’d spent months – like many fibromyalgia patients – wondering what was wrong with me and finally I had an answer. What’s more, it had a name. I had an identity, an explanation that meant people would finally understand.

Or at least, that’s what I thought.

A couple of years into my diagnosis I realised the name meant nothing. No one had heard of it and the name I’d wished for was met with blanks stares. I might as well have been telling people I had blob disease. No one had a clue. And even worse, my doctor didn’t have a clue and, therefore, I didn’t have a clue. This diagnosis, this name, it all seemed pretty pointless.

Fast forward a year or two and I got angry. Over 3% of the population have this condition (that’s a lot) and yet no one’s ever heard of it. How could that be possible? When I started this blog, I was on a mission to raise awareness and encourage more people to fight to be heard. I am immensely passionate about the fact that no one should suffer in silence. I don’t care whether it’s mental health or physical health, abuse, racism, sexual harassment, you name it. If you’re struggling, you tell someone and hopefully that someone should help you to fight your corner. Those with a voice should shout ten times louder to help those suffering in silence. And so I got on my megaphone.

Fast forward a few more years and we reach today, and I’ll be honest… things ain’t looking all too pretty. Everything above is still true; I’m still glad of a diagnosis, I still know it doesn’t mean anything, and I still want to fight to raise awareness. But, the cynic in me is starting to question a few things.

How is it possible that no one believes in what this is? How is it possible that my own doctor still doesn’t get it? How come people the world over aren’t desperate to understand this condition? How come my pain seems to be getting worse and no one seems too worried? How come the online explanation of fibromyalgia reads like a who’s who of crap, and yet we’re all just expected to carry on?

So now I’m starting to wonder, what is this thing they call fibromyalgia? Is this my diagnosis? Are you sure? Are you sure you got it right?

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7 comments on “What if my doctor got it wrong?”

Hi Sarah, I understand your frustration and can relate to it to a degree, however as someone with a more manageable autoimmune disease I feel like it would be silly to say I’m in the same boat. I have Celiac, and like you I got a diagnosis after years of feeling really, really shitty: in pain, suffering from chronic fatigue so severe that most days I felt like I could pass out any minute, and yet I kept being told that I just had to lose weight and I would feel better, and that there was absolutely nothing wrong with me. It was only after doing my own homework and going on an an elimination diet for several months that I suspected that something was really off, and finally found a doctor to put a name on it. Unfortunately mis-information (and plain old lack of information) is still rampant, and people with autoimmune diseases are often still treated like they are being they are being big babies, rather than been given support. I myself am currently dealing with family members who have clearly not even bothered to look up what Celiac disease actually consist of and keep offering me wheat-based foods and some even treat me like I am being obsessive when I say no thank you.

It sucks.

Luckily there are some people out there who do understand and who are trying to help out and to educate people, and to find ways to help us deal with our disease and help us function as best as we can. I have learned lots from Kris Kresser, who is a functional doctor, Dr. Amy Myers, and The Paleo Mom, who has managed to put an autoimmune condition in remission with lifestyle, and who constantly shares new studies relating to autoimmune disease broken down into understandable terms.

I wish you all the best, and to find love and support and hopefully a way to feel better. Hugs!

Thank you so much Elisa – this is such a lovely comment to find on my post. Celiac disease may not be the same type of pain, but I completely relate to people not understanding it and others not even trying. These ‘small’ conditions are such a huge part of our life and it can be so difficult to function without some kind of support system. I’m glad you’ve got some good resources, and thank you again for your comment. I really appreciate it! Hugs to you too! x

Having read your blog tonight and your comments on diet the other day and now reading the above comment I wonder what you feel about visiting a homeopath? I was having an allergic reaction to food and the doctors couldn’t find what was causing the reaction so ended up just giving me antihistamine tablets. They helped but didn’t stop the reaction. I didn’t want to take tablets everyday so I went to a homeopath who identified the foods causing my allergy. ( The main one was sugar and aspartame found on artificial sweeteners and diet drinks) I am SO much better now. It just seems to me if the traditional route of medicine isn’t working maybe try a homeopath who might identify what might work. It certainly won’t do you any harm.

Thank you for this. I’m still not sure how I feel about homeopathy, and I’d be interested to see if it’s worked for other fibro patients. I don’t doubt diet plays a big part, perhaps not on the condition itself but certainly on some of the symptoms. I’ll give it some thought… x

I feel your pain. Literally! I, too, am so frustrated. My rheumatologist seems to have a good understanding of fibrobut still in pain every single day and she says that’s the way it’s always going to be. Seriously, what kind of life is this? But anyway, I see a physical medicine/homeopathic doctor and he has been very helpful with my GI issues. My other doctors didn’t even care that I couldn’t eat for months and lost 65 pounds. Thankfully I’m doing much better now. I haven’t noticed any significant change in my fibro pain though.

I’m just going through some of my old blog posts and can’t believe I didn’t reply to this comment! How rude! So sorry. I also can’t believe your doctor didn’t care when you lost 65 pounds and couldn’t eat. I’m not one for doctor-bashing but my God that is horrific! You poor thing. I hope your fibro pain isn’t too bad at the moment and that you’re continuing to do well. 🙂 x

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Welcome! I’m Sarah, a chronic pain blogger sharing my tips and tricks for living a life less physical – but no less fun.

I’ve had migraines and fibromyalgia for the best part of my adult life, and I use my corner of the internet to discuss challenges and coping strategies, with a healthy dose of sarcasm and far too many references to pizza.